Petronille Healthy Society is an IRS Section 501 (c) (3) organization

The Project
Training Sickle Cell Families to Lead the Policy Conversation

The DMV Sickle Cell Advocacy Accelerator is a 12-month pilot initiative of Petronille Healthy Society (PHS). It trains sickle cell disease (SCD)-affected family advocates across Maryland, Washington, D.C., and Virginia in direct legislative engagement, and builds a permanent tri-state coalition, the DMV SCD Policy Coalition, giving the sickle cell community a unified voice in the decisions that shape their care.

Why Now
A Critical Moment for Sickle Cell Policy

For too long, policy has been made about sickle cell patients rather than with them. Over 70% of SCD families do not know how to engage state health policy processes, and fewer than 15% have ever participated in legislative advocacy. The window to change that is open right now.

Federal Momentum

Attention to SCD has never been higher, with renewed Congressional interest in comprehensive care legislation and recent FDA approvals of novel therapies raising the stakes for equitable access.

A Strategic Region

The Maryland and D.C. corridor is a high-need, high-opportunity zone where state-level wins can serve as models for national replication.

An Open Policy Window

Maryland Medicaid does not yet reimburse community health worker-led SCD care coordination, so trained advocate testimony can directly shape implementation standards right now.

The Work
What the Accelerator Will Do
1
Legislative Advocacy Capacity Building

We train 25 SCD family advocates across Maryland, D.C., and Virginia in grassroots policy engagement: legislative tracking, testimony preparation, and direct legislator communication, building a sustainable, geographically distributed advocacy network.

2
Policy Outreach & Grassroots Events

Three regional Sickle Cell Policy Forums bring together patients, caregivers, legislators, healthcare administrators, and clinical experts to surface community-identified priorities, generating evidence-based policy briefs shared directly with the Maryland General Assembly, D.C. Council, and Virginia General Assembly health committees.

3
Inter-State Coalition Building

The DMV SCD Policy Coalition connects trained advocates with existing SCD organizations across state lines to create a unified regional voice, developing shared policy agendas, coordinating joint campaigns, and mentoring emerging advocates long beyond the project period.

The Community
Who We Serve

The Accelerator serves SCD-affected families, patients, parents, caregivers, and adult survivors, across the DMV metropolitan area, with a specific focus on communities with documented high SCD prevalence and disproportionately low access to comprehensive care centers.

Washington, D.C. Prince George's Fairfax County

By the end of the pilot, trained advocates will have testified before the Maryland General Assembly, submitted public comment to the Maryland Department of Health, and generated a policy-ready brief for statewide adoption, with a replication framework for D.C. and Virginia. Unlike programs that position patients as storytellers for professional advocates, the Accelerator trains SCD families to be the policy advocates themselves. Every lesson learned in the DMV becomes a blueprint for sickle cell communities nationwide.

25Family Advocates Trained
3Jurisdictions: MD · DC · VA
2,500SCD Patients in the DMV Reached
12Months, Four Phases
The Roadmap
Four Phases Over Twelve Months
Months 1-2
Phase 1 · Advocate Recruitment & Baseline Assessment

Recruiting 25 SCD family advocates from Prince George's County , Fairfax County and D.C. Wards 7 and 8 through community health partners, hospital social workers, and PHS's Sickle Cell Stories network, then establishing the tri-state coalition's governance structure.

Months 3-5
Phase 2 · Advocacy Training Intensive

A six-module curriculum covering the SCD policy landscape, legislative process navigation, testimony and storytelling for policy impact, coalition building, media engagement, and health equity framing, through virtual workshops, in-person sessions, and peer mentoring circles. Each advocate drafts a capstone policy brief on SCD care coordination.

Months 6-9
Phase 3 · Policy Forums & Direct Engagement

Three regional Sickle Cell Policy Forums, one per jurisdiction with 50 to 75 participants each, featuring advocate testimony, clinical panels, and structured dialogue with legislators and health officials. The phase culminates in an advocacy day in Annapolis with the Maryland General Assembly.

Months 10-12
Phase 4 · Coalition Sustainability & Evaluation

Trained advocates transition into ongoing DMV SCD Policy Coalition working groups. We measure knowledge gains and advocacy engagement, document outcomes, and develop a replication framework so other regions can implement similar accelerator models.

Get Involved
Ready to Raise Your Voice?

The Accelerator is an open invitation to everyone who believes sickle cell families deserve a seat at the policy table.

A.Become an Advocate

If you are a patient, parent, caregiver, or adult survivor living in Maryland, D.C., or Virginia, apply to become one of our 25 trained family advocates. No prior policy experience needed, only your story and your commitment.

B.Join the Coalition

If you represent an SCD organization, a community health center, a hospital, or a faith community, join the DMV SCD Policy Coalition and add your voice to a unified tri-state agenda.

C.Share Your Expertise

Clinicians, researchers, and policy professionals can contribute as training faculty, forum panelists, and mentors to emerging advocates.

D.Stand With Us

Attend a Sickle Cell Policy Forum, share our advocates' stories, and help amplify a movement where the people most affected by sickle cell disease lead the change: policy made with the community, not merely about it.

Supported by an independent education grant from Pfizer.