360° SCD Hub
Advocacy · Policy · Action

Arizona Deserves a Sickle Cell Comprehensive Care Act.

Track the federal Sickle Cell Disease Comprehensive Care Act. See which states are leading. Help us plant Arizona's flag — and turn lived experience into law.

See where the bill stands → The Arizona Play
Dr. Rob Gillio
New from Dr. Rob · May 2026

The Sickle Cell Disease Comprehensive Care Act — Why Arizona Can't Wait

Texas passed a registry. New York is wiring SCD into Medicaid Health Homes. California is going after gene therapy. Where is Arizona? Read Dr. Rob's call to action →

Read the full post →

The Federal Sickle Cell Disease Comprehensive Care Act

Two parallel bills in the 119th Congress (2025-2026) would let state Medicaid programs establish coordinated SCD Health Homes with dental and vision services included. Neither has been signed into law yet — which is exactly why state-level action matters now.

S.721 Senate
Sickle Cell Disease Comprehensive Care Act
Introduced · Feb 25, 2025
Sponsors: Sen. Cory Booker (D-NJ), Sen. Tim Scott (R-SC), Sen. Van Hollen, Sen. Adams. Pending in Senate Finance Committee.
View on Congress.gov →
H.R.5178 House
Sickle Cell Disease Comprehensive Care Act
Referred · Sept 8, 2025
Sponsors: Rep. Neal Dunn (R-FL), Rep. Danny K. Davis (D-IL). Pending in House Energy & Commerce Committee.
View on Congress.gov →
S.735 / H.R.1796 Companion
SCD & Heritable Blood Disorders Research, Surveillance, Prevention & Treatment Act of 2025
Introduced · 2025
Companion bill reauthorizing CDC's Sickle Cell Data Collection (SCDC) program and expanding state surveillance.
View on Congress.gov →

State-by-State SCD Legislation Tracker

Click any state to see its SCD legislation status. Green = comprehensive SCD law passed. Amber = active bills or partial action. Gray = no SCD-specific legislation yet. Arizona is outlined in red.

Legend: Law passed Active legislation No SCD-specific law

The Arizona Play: Plant the Flag.

Arizona has no SCD-specific state legislation. We're not in CDC's SCDC surveillance program. ~900 Arizonans living with SCD remain functionally invisible to state policy. SCFA's role: build the coalition and draft model legislation Arizona will need when (not if) the federal Act passes.

PILLAR 1
Arizona SCD Registry
Establish a state registry within AZ DHS, modeled on Texas HB107. Single source of truth for AZ SCD cases. Feeds the PHIT Scorecard.
PILLAR 2
AHCCCS SCD Health Home
Add SCD as a single-qualifying condition under AHCCCS Health Home, mirroring NY's Medicaid model. Care coordination + CHWs reimbursed.
PILLAR 3
ED 60-Minute Standard
Quality standard for SCD vaso-occlusive crisis: ESI-2 patients treated within 60 minutes of arrival. Banner Health pilot. Statewide replication.
PILLAR 4
Advocate Training Pipeline
AZ-LEAP: a hybrid of L.E.A.P. + SC Crew. 24 trained advocates per year. Every advocate gets a 360° SCD Hub policy dashboard.

The 2025 Pfizer SCALE Cohort — What's Working Nationally

Pfizer's Sickle Cell Advocacy & Leadership Empowerment (SCALE) grants name the work the SCD field believes will move the needle. We're mapping each play to Arizona — see the gameplan for the full head-to-head.

Data & Surveillance
As One Foundation
AS ONE Voice Pilot
Community engagement strategy for the new Texas SCD Registry (HB107). Trust + culturally relevant communications.
AZ mirror: Patient Voices for the AZ SCD Registry — convene SCD families to co-design AZ's registry before AZ DHS builds it.
Data & Surveillance
Loma Linda University
Geospatial Mapping for Centers of Excellence
Maps Southern California SCD patients vs NASCC Centers of Excellence. Output: advocacy report + scalable policy brief.
AZ mirror: AZ SCD Access Desert Map — overlay AHCCCS plans, travel time, and the single AZ SCD specialty clinic. Funder-ready in 60 days.
Data & Surveillance
NY Health & Hospitals
SCD CARE Connection
Integrated CHW–Health Home case management model. Generates evidence for Medicaid reimbursement reform.
AZ mirror: Banner SCD CHW Pilot — leverage the existing SCFA-Banner nurse training contract and add CHW care coordination billable under AHCCCS.
Assessment
Bridges Point Inc.
CARE Initiative
Patient-led qualitative data on social barriers — transportation, stigma, housing, food. Town-hall format.
AZ mirror: AZ SCD Lived Experience Survey — deploy through the 360° SCD Hub. Quarterly town halls in Phoenix, Tucson, and Yuma.
Assessment
Sickle Cell Medical Advocacy Inc.
Healthcare Navigator–Patient Assistance
Addresses ED failures to treat ESI-2 SCD patients within 1 hour. Pain-control outcomes. Policy briefs.
AZ mirror: One-Hour Initiative — partner with Banner Health to measure ESI-2 door-to-treatment time. Translate to a statewide quality standard.
Policy & Advocacy
CA Sickle Cell Disease Foundation
SC Crew Policy Training Initiative
Trains transition-aged youth (16-24) with SCD to be policy changemakers. Coordinated state legislative visit.
AZ mirror: AZ SC Crew — recruit 12 transition-aged advocates per year. Annual capitol day at the AZ Legislature.
Policy & Advocacy
Sickle Cell Consortium
L.E.A.P. — Leadership, Education, Advocacy, Policy
Multi-week hybrid advocate training. Output: a national SCD Advocacy & Policy Playbook.
AZ mirror: AZ-LEAP — 6-week cohort, 2x/year, embedded with the 360° SCD Hub. Becomes the regional model for AZ, NM, NV, UT.
SCFA's Play
Sickle Cell Foundation of Arizona
AZ Sickle Cell Comprehensive Care Coalition
A single coalition convening Banner, Phoenix Children's, U of A, AHCCCS, faith communities, and patient advocates. Charter a model AZ SCD Comprehensive Care Act by 2028.
Why we win: SCFA already operates the 360° SCD Hub + Banner Health training contract. The infrastructure exists. The coalition seat is open.

How You Can Help

If you live with SCD or care for someone who does

  • Share your story in the AZ SCD Lived Experience Survey (launching summer 2026)
  • Apply to the next AZ-LEAP advocate cohort
  • Sign up to attend AZ Capitol Day with the AZ SC Crew

If you're a provider, partner, or policymaker

  • Join the AZ Sickle Cell Comprehensive Care Coalition
  • Endorse the federal Sickle Cell Disease Comprehensive Care Act
  • Adopt the One-Hour Initiative for ESI-2 SCD patients in your ED

Be the reason Arizona finally has an SCD law on the books.

Get the 2-year gameplan, the model legislation language, and the coalition charter — straight to your inbox.

Join the Coalition →