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Holly John: The Fight for Equitable Sickle Cell Care Is a Fight for Freedom

Holly John/ LinkedIn

Jun 20, 2026, 04:25

Holly John: The Fight for Equitable Sickle Cell Care Is a Fight for Freedom

Holly John, Senior Director of Patient Advocacy at Agios Pharmaceuticals, shared a post on LinkedIn:

“In the spirit of both World Sickle Cell Day and Juneteenth, I’ve been reflecting on what freedom and liberation truly mean for underserved communities.

Juneteenth marks Black freedom and liberation, and that holds deep significance in the context of sickle cell disease (SCD), a condition that predominantly affects the Black community.

A community that continues to advocate for equitable care, to have their voices heard, and to experience true freedom within healthcare.

Back in May, I had the privilege of presenting at the 10th Annual Sickle Cell Community Consortium (SCCC) Leadership Summit, where I shared learnings from the RISE UP program, a clinical trial and awareness campaign built from the ground up in partnership with the SCD community.

What I witnessed in that room is the reason I do what I do. It is the reason I am a passionate ally.

I saw courage. People willing to speak openly and call out the uncomfortable truths. That the disparities we see in SCD are not coincidental, they are rooted in systemic inequity.

That for too long, this community has been left behind across key measures of health and care.

But alongside that, I saw something even more powerful. A community that refuses to settle. Patients, advocates, and leaders pushing for more, not just better treatments but justice, equity, and dignity in care.

I’m proud to stand as an ally to this community, championing work like the RISE UP clinical development program. Not just another patient engagement initiative, but a commitment to doing things differently.

Recognizing that better outcomes simply will not happen without patients at the table.

From trial design to recruitment to every element of the awareness campaign, patients were in the room, shaping decisions, guiding direction, and bringing expertise that no one else could.

As we mark Juneteenth and World Sickle Cell Day, I want to say this clearly.

The fight for equitable SCD care is a fight for freedom.

We see this community. We hear this community. And we must do better. They deserve a healthcare system that fights as hard for them as they fight every day to live their lives fully.

Thank you to the Sickle Cell Consortium and to everyone in this community for your courage, your voice, and your unwavering commitment to change.”

Holly John: The Fight for Equitable Sickle Cell Care Is a Fight for Freedom