PlainBillCongress, translated.Legislation. Context. Public interest.Referred to the House Committee on Energy and Commerce.
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People & committees
Rep. Adams, Alma S. [D-NC-12] · D–NC
Legislative record
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Referred to the House Committee on Energy and Commerce.
Introduced in House
Introduced in House
Primary sources
Text links open the official source. We also preserved the text version used in the PlainBill explanation below.
Source last updated: Oct 14, 2026. Consult Congress.gov for the current record.
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PlainBill explanation
Based on the full Introduced in House · 2026-09-24 text. This explanation has not received human editorial review. This overview describes the proposal’s major provisions; it does not establish what its real-world effects would be.
The proposed Sickle Cell Disease Treatment Centers Act of 2026 would create federal grants for networks linking medical centers, other health care providers, and community nonprofits. These networks would coordinate lifelong care for people with sickle cell disease, including the move from children's to adult care. The bill would also establish national coordination and require data collection. It would authorize future funding without itself providing that money.
This Act may be cited as the Sickle Cell Disease Treatment Centers Act of 2026.
The Secretary shall award grants to eligible entities to establish treatment centers using a hub-and-spoke framework
(1) promoting access to coordinated, lifelong health care for all patients with sickle cell disease; (2) providing support to establish integrated health care teams for patients with sickle cell disease over a patient’s lifetime; (3) improving the health and well-being of children, youth, and adults with sickle cell disease; (4) improving the pediatric-to-adult health care transition;
The Secretary shall establish, or enter a cooperative agreement with an entity to establish, the National Sickle Cell Disease Coordinating Center
Collecting, coordinating, monitoring, and distributing data, best practices, and findings regarding the activities funded under grants made to eligible entities under this section.
there are authorized to be appropriated such sums as may be necessary for fiscal year 2027 and each fiscal year thereafter.
An eligible grant recipient would need a medical hub—a hospital, clinic, or university health center—working with at least one partner care provider, called a spoke, and at least one community nonprofit.
(c) Eligible entity The term eligible entity means any entity that is comprised of— (1) a hub-and-spoke network that includes— (A) a medical hub that is a hospital, clinic, or university health center; and (B) at least 1 spoke working in partnership with the medical hub; and (2) at least 1 community-based nonprofit organization working in a partnership with the hub-and-spoke network.
A medical hub would have to provide comprehensive sickle cell treatment, have experience serving people with sickle cell disease or other hemoglobinopathies, and follow clinical guidelines based on professional consensus. Its treatment could include stem cell transplants, cell and gene therapies, and other listed services; the definition does not require every listed service.
(3) Medical hub The term medical hub means a hospital, clinic, or university health center that— (A) provides comprehensive sickle cell disease treatment, which may include medical and surgical treatment, such as provision of stem cell transplants and cell and gene therapies, an outpatient treatment clinic led by a board-certified hematologist, infusion capability, telehealth capability, genetic counseling, access to home care, and a pharmacy; (B) has experience serving individuals living with sickle cell disease or other hemoglobinopathies; (C) follows consensus-based clinical practice guidelines;
Spokes could include health centers, hospitals, clinics, primary care providers, outpatient clinics, infusion centers, and other providers. Each would need at least one collaborative agreement with a medical hub and one or more community nonprofits, and a community health worker on its care team. A spoke could expand its services over time to become a hub.
(4) Spoke The term spoke means an entity— (A) that provides health care services, including— (i) a Federally qualified health center, as defined in section 1905(l)(2)(B) of the Social Security Act; (ii) a hospital, clinic, or university health center that provides clinical care and has telehealth capability; (iii) a primary care provider; (iv) an outpatient treatment clinic; (v) an infusion center; or (vi) other health care providers; (B) that has at least 1 collaborative agreement with a medical hub and one or more community-based organizations; and (C) that incorporates a community health worker into the care team.
such entities serving as spokes— (i) may provide sickle cell disease care services; and (ii) may increase services over time to meet the definition of medical hubs and connect with new spokes;
The proposed program's purposes include collecting clinical outcomes and complication data from participating states, including migrating and foreign-born patients in reporting, and educating the public about sickle cell disease and trait. These are stated purposes, not evidence that those results have occurred.
(5) collecting and contributing clinical data from States participating in the Sickle Cell Data Collection program of the Centers for Disease Control and Prevention, including the collection of health outcomes and associated complications reported pursuant to such program; (6) ensuring that reporting with respect to sickle cell disease includes reporting on all patients with sickle cell disease, including migrating and foreign-born patients; and (7) conducting significant public health awareness and education activities with respect to sickle cell disease and sickle cell trait.
Medical hubs would use grants for network operations, compliance with treatment guidelines identified by the Secretary, and provider education. Education would also address social conditions affecting health and implicit bias that may affect patients' care and quality of life.
(1) Medical hub The medical hub of the eligible entity shall carry out the following: (A) Operating and administrating costs of operating a hub-and-spoke framework. (B) Complying with consensus-based sickle cell disease treatment guidelines, as identified by the Secretary. (C) Educating health care providers on sickle cell disease treatment standards and protocols.
(H) 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 disease, trait, or other hemoglobinopathies.
Hubs would provide coordinated care management, which could include primary and specialty care, pain treatment, mental health services, and genetic counseling. They would also coordinate specialty care and reproductive health and family planning services, and provide a dedicated sickle cell expert to support spokes and community nonprofits.
(D) Providing integrated care management, which may include— (i) primary care; (ii) specialty care; (iii) pain management; (iv) mental health services; (v) genetic counseling services; and (vi) other services. (E) Coordinating specialty care services, whether provided at the medical hub or spoke. (F) Coordinating reproductive health and family planning services for patients with sickle cell disease, trait, or other hemoglobinopathies. (G) 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 organization.
Hubs would provide remote health appointments when appropriate and help patients access them where feasible. They would implement programs for moving from children's to adult care and coordinate social work or community health worker services with nonprofits.
(I) Providing telehealth appointments to patients when appropriate and facilitating access to telehealth services for sickle cell disease patients to the extent feasible. (J) Implementing pediatric-to-adult health care transition programs for purposes of ensuring coordinated patient graduation from pediatric to adult providers for all patients. (K) Providing social work services or community health worker services in coordination with one or more community-based organizations.
Hubs would collect and distribute data required by the national coordinating center or the Secretary. They would also undertake quality improvement concerning care standards and patient outcomes as the Secretary may require.
(L) Collecting and distributing data as required by the National Sickle Cell Disease Coordinating Center established under subsection (f) or otherwise required by the Secretary. (M) 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 require.
Community nonprofits would have to provide or coordinate services for patients and families. Possible services include education, help with food, housing, education and transportation needs, social work, sickle cell trait testing, coordination with genetic counselors, and quality improvement. The listed examples would not all be mandatory.
(2) Community-based organization The community-based organization of the eligible entity shall provide or coordinate services to patients and families, which may include the following: (A) Providing education and outreach to individuals at-risk for sickle cell trait, individuals with sickle cell trait, sickle cell disease patients, caregivers, and health care providers. (B) Providing support in addressing social determinants of health, such as food insecurity, housing insecurity, and access to education and transportation. (C) Providing social work services or community health worker services in coordination with a medical hub or spoke. (D) 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 disease, including through coordination with a genetic counselor. (E) Engaging in quality improvement with respect to standards of care or health and quality of life outcomes among sickle cell disease patients, as identified by the Secretary.
Spokes would have to provide or coordinate the listed services: collaboration with the hub, care standards developed with the hub, primary care, genetic counseling or specialty care, appropriate remote appointments, medical or surgical treatment, individual care plans, social work or community health worker services, and required data collection and distribution.
(3) Spoke The spokes of the eligible entity shall provide or coordinate each of the following services: (A) Collaborating with a medical hub to coordinate and support care for sickle cell disease patients. (B) Providing standards of care as developed in coordination with the medical hub. (C) Providing primary care services, genetic counseling, or specialty care. (D) Providing telehealth appointments, as appropriate. (E) Providing medical or surgical treatment. (F) Implementing individual care plans. (G) Providing social work services or community health worker services in coordination with one or more community-based organizations. (H) Collecting and distributing data as required by the National Sickle Cell Disease Coordinating Center established under subsection (f).
Recipients could also help secure reimbursement through state health plans and other health programs, and help patients obtain suitable insurance and understand their insurance rights. Grants could pay premiums and patients' share of covered costs only where state and federal law otherwise permit.
an eligible entity selected to receive a grant under this section may use funds received through the grant— (A) to identify and secure resources for ensuring reimbursement under, for the State involved, the State plan under title XIX of the Social Security Act (or a waiver of such plan), State child health plan under title XXI of such Act (or a waiver of such plan), and other health programs for the prevention and treatment of sickle cell disease, including by working with community-based sickle cell disease organizations and other nonprofit entities; (B) to assist sickle cell disease patients with accessing appropriate health insurance, including— (i) through the payment of insurance premiums and cost-sharing amounts, to the extent otherwise permitted under State and Federal law; (ii) by working with community-based sickle cell disease organizations and other nonprofit entities; and (iii) by helping sickle cell disease patients know their rights with insurance programs;
Optional grant uses would include improving remote care access where feasible, evidence-based education for health care, school and correctional staff, and access to trait testing and genetic counseling. Recipients could also provide transportation or travel reimbursement for patients who need but lack access to in-person treatment center care.
(C) to facilitate access to telehealth services for sickle cell disease patients and individuals with sickle cell trait, to the extent feasible; (D) to fund evidence-based programs that provide education to health care providers, teachers and school personnel, and correctional institutional personnel, on the care of individuals with sickle cell disease or trait in health care settings and other appropriate settings, including schools and prisons; (E) to develop a system of social and community supports, including transportation services or travel reimbursement for sickle cell disease patients who do not have, but who need access to, in-person care with the Sickle Cell Disease Treatment Centers; and (F) to facilitate access to sickle cell trait testing and genetic counseling.
Applicants would have to explain how their network and nonprofit partners would work together and meet application requirements set by the Secretary. Where practicable, awards would focus on regions with disproportionately high numbers of affected residents per capita while also reaching eligible entities nationwide.
(1) Application An eligible entity desiring a grant under this section shall submit an application to the Secretary at such time, in such manner, and containing such information as the Secretary may require, including a description of how the hub-and-spoke entity and community-based organization will collaborate in carrying out the activities described in subsection (d).
(2) Geographic distribution The Secretary shall award grants under this section, to the extent practicable, to eligible entities, with a focus on regions where a disproportionate number of patients with sickle cell disease, individuals with sickle cell trait, or other heritable hemoglobinopathy patients per capita reside, and to eligible entities nationwide so that patients can access more comprehensive sickle cell disease treatment services no matter where they reside.
The Secretary could give award priority to applicants that include a qualifying historically Black college or university or minority-serving institution with one of the listed health or social work programs. Applicants serving rural areas or areas with high sickle cell disease prevalence could also receive priority. These preferences would be optional.
(3) Priorities in making awards In awarding grants under this section, the Secretary may give priority to eligible entities that— (A) include at least one historically Black college or university (defined as a part B institution under section 322 of the Higher Education Act of 1965) or minority serving institution (defined as an eligible institution under section 371 of such Act) that has a medical school, nursing school, nurse practitioner or physician assistant program, genetic counseling program, or school of social work; (B) serve an area with a high prevalence of sickle cell disease; or (C) serve a rural area.
The Secretary would establish a national coordinating center directly or through a cooperative agreement. The center would coordinate grantees, advise on program design, develop a national care strategy, coordinate federal data collection, and regularly update a national assessment of care needs.
(1) In general The Secretary shall establish, or enter a cooperative agreement with an entity to establish, the National Sickle Cell Disease Coordinating Center, which shall coordinate the activities conducted by grantees under this section and carry out the activities described in paragraph (2).
(A) Advise the Secretary on the design and implementation of, and coordinate the infrastructure of, the Sickle Cell Disease Treatment Centers established under subsection (b), including with respect to administrative requirements and ensuring that sickle cell health care is available across the United States. (B) Develop a national strategy for the practice of equitable care, coordinated comprehensive quality care, research and resources for patients and health care providers, and treatment modality options to improve patient outcomes, and submit such national strategy to the Secretary. (C) 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 disease.
The national center would maintain a research and care strategy with patients, researchers and providers, and establish a rotating stakeholder advisory panel. It would support treatment networks, provide or coordinate technical assistance, and educate the public. Improving outcomes and affordability would be assigned objectives, not guaranteed results.
(D) Coordinate with hub-and-spoke networks, patients, researchers, and health care providers to maintain a comprehensive sickle cell research, treatment, and national care strategy. (E) Establish a rotating panel of stakeholders, including health care providers, patients, individuals impacted by sickle cell disease, allied health professionals, care coordinators, social workers, community health workers, and sickle cell community-based and advocacy organizations to advise the Center, provide up-to-date information and forecasts on status and plans for improving sickle cell care, treatment, and access to treatment modalities for individuals and families living with sickle cell disease. (F) Coordinate and support hub-and-spoke frameworks. (G) Support improvement in patient and family-centered care, health outcomes, and care affordability by improving access to care. (H) Provide or coordinate technical assistance and support to health care providers, family members and advocates, public health professionals, policymakers, and patients that want to improve access to quality care, telemedicine, family planning, health care transition, and family and community engagement. (I) Inform and educate the public about sickle cell disease, sickle cell trait, and options for quality care.
The Secretary, through the Centers for Disease Control and Prevention and in coordination with the national center, would collect and share information about funded activities. Updated disease and outcome data would support estimates of new and existing cases, geographic distribution, health disparities, treatment use, complication prevention, and risk factors.
The Secretary, acting through the Director of the Centers for Disease Control and Prevention, in coordination with the National Sickle Cell Coordinating Center established under subsection (f), shall carry out the following: (1) Collecting, coordinating, monitoring, and distributing data, best practices, and findings regarding the activities funded under grants made to eligible entities under this section. (2) Collecting and maintaining up-to-date data on sickle cell disease, including subtypes as applicable, and their associated health outcomes and complications, in consultation with States participating in the Sickle Cell Data Collection of the Centers for Disease Control and Prevention, including for the purpose of— (A) improving national incidence and prevalence data, including the geographic distribution of affected individuals; (B) identifying health disparities impacting individuals born with sickle cell disease, including subtypes as applicable, and other hemoglobinopathies; (C) assessing the utilization of therapies, comprehensive complication risk screening, and strategies to prevent complications resulting from sickle cell disease and to increase quality of life; and (D) evaluating the effects of genetic, environmental, behavioral, and other risk factors that may affect individuals with sickle cell disease.
The Centers for Disease Control and Prevention would also develop educational materials, awareness campaigns or outreach about how sickle cell disease is inherited, treatment, preventing complications, and the prevalence of sickle cell trait.
(3) Developing educational materials, public awareness campaigns, or other outreach programs regarding the inheritance pattern, treatment of, and prevention of complications from sickle cell disease and prevalence of sickle cell trait, as well as programs and activities that will enhance the lives of individuals living with sickle cell disease and sickle cell disease trait.
Within 180 days after enactment, and before each subsequent new grant cycle, the Secretary would have to publish a request for stakeholder feedback in the Federal Register. Feedback would address best practices for establishing and implementing treatment centers and other information the Secretary may require.
(h) Request for information Not later than 180 days after the date of enactment of the Sickle Cell Disease Treatment Centers Act of 2026, and in advance of each new grant cycle thereafter, the Secretary shall publish in the Federal Register a request for information seeking feedback from stakeholders on— (1) best practices with respect to the establishment and implementation of Sickle Cell Disease Treatment Centers; and (2) any other information that the Secretary may require.
The Secretary would report to the specified congressional committees within three years after enactment and every five years thereafter. Reports would address health outcomes, grant recipients, funded activities, the number and demographics of patients served, and patient experiences.
(i) Report to Congress (1) In general Not later than 3 years after the date of the enactment of the Sickle Cell Disease Treatment Centers Act of 2026, and every 5 years thereafter, the Secretary shall submit to the Committee on Health, Education, Labor, 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 patients. (2) Report elements The report described in this section shall include— (A) a summary and description of eligible entities operating a hub-and-spoke system that are receiving grant funds under this section; (B) information about the specific activities supported by grant funds awarded under this section with respect to each eligible entity; (C) the number of sickle cell disease patients served by grant programs funded under this section and demographic information about those patients, including race, sex, gender, geographic location, and age; and (D) information about patient experiences with the hub-and-spoke system and community-based organizations.
The new activities would have to add to, rather than replace, other authorized Department of Health and Human Services activities concerning sickle cell disease.
(j) Supplement, not supplant The activities under this section shall supplement, not supplant, otherwise authorized activities of the Department of Health and Human Services relating to sickle cell disease.
The bill would authorize Congress to provide whatever funding is necessary for fiscal year 2027 and every fiscal year thereafter. It specifies no dollar amount or final funding year; this authorization would not itself appropriate money.
(k) Authorization of appropriations (1) In general To carry out this section, there are authorized to be appropriated such sums as may be necessary for fiscal year 2027 and each fiscal year thereafter.
For money actually appropriated, the bill would permit allocations of 70 percent for network activities, 20 percent for community nonprofit activities, 5 percent for the national center, and 5 percent for the federal data collection program. The allocation language says these amounts may be awarded or used, rather than requiring those allocations.
(2) Allocation to activities Of the amount appropriated under paragraph (1) for a fiscal year— (A) 70 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 entities; (B) 20 percent may be awarded to eligible entities for purposes of supporting the activities of community-based organizations that are a part of such eligible entities; (C) 5 percent may be used for the establishment and maintenance of the National Sickle Cell Disease Coordinating Center described in subsection (f); and (D) 5 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 (g).
The supplied official-actions snapshot, updated October 14, 2026, records introduction in the House and referral to the House Committee on Energy and Commerce on September 24, 2026. This snapshot does not establish what happened afterward.
Source snapshot updated 2026-10-14T15:28:14Z. 2026-09-24: Referred to the House Committee on Energy and Commerce. 2026-09-24: Introduced in House
A closer look
Reviewed version: Introduced in House · 2026-09-24. These findings describe provisions and who may benefit; they are not judgments of waste, corruption, or motive.
This review covers the supplied bill text. “None identified” does not rule out provisions in later versions or accompanying reports and disclosures.
Provisions outside the bill’s main subject, or policy changes attached to appropriations.
None identified in the reviewed text
No unrelated provision or policy rider attached to appropriations was identified in the complete supplied introduced text. This conclusion is limited to that version and does not establish absence in other versions or accompanying materials.
Spending directed to particular recipients or places outside ordinary competitive or formula-based allocation.
None identified in the reviewed text
No congressionally directed spending for a particular recipient or place was identified in the complete supplied introduced text. This finding is limited to that version; formal earmark status cannot be fully assessed without accompanying materials, and absence in other versions or accompanying materials is not established.
Narrow exceptions, exemptions, or preferential treatment that warrant a closer look.
Findings to examine
The supplied text contains a discretionary institutional preference in grant selection. Classification as a targeted benefit is not a judgment about its justification or effects.
Applicants that include a qualifying historically Black college or university or minority-serving institution with a listed health or social work program could receive priority for treatment-center grants. This would give those applicants an optional selection preference within the bill's main care program, without guaranteeing an award or naming a specific institution.
(3) Priorities in making awards In awarding grants under this section, the Secretary may give priority to eligible entities that— (A) include at least one historically Black college or university (defined as a part B institution under section 322 of the Higher Education Act of 1965) or minority serving institution (defined as an eligible institution under section 371 of such Act) that has a medical school, nursing school, nurse practitioner or physician assistant program, genetic counseling program, or school of social work;
Full text preserved for this analysis. Legislative record snapshot: Oct 14, 2026. How PlainBill uses AI