Ensuring Equitable Access to New Gene Therapies

April 5, 2021 2:00 PM - 3:00 PM

Webinar, click "live-stream" button to view

Add to Calendar 4/5/2021 2:00:00 PM 4/5/2021 3:00:00 PM Ensuring Equitable Access to New Gene Therapies

While recent clinical trials of innovative, new gene therapies show incredible promise for patients who have faced a lifetime of unmet medical needs, the biggest challenge for these therapies is yet to come – ensuring equitable access.

A critical moment for this issue could be the development of new therapies for sickle cell disease, which affects approximately one in 365 Black Americans. What can the life sciences do to ensure that all patients have access to what could be life-changing medicines?

In this month’s Make Shift Happen, panelists from the gene therapy sector and patient advocacy space will discuss:

  • The current state of ED&I in therapeutic development
  • Taking a patient-centric approach to developing new gene therapies
  • Challenges and opportunities for improving therapeutic accessibility
Webinar, click "live-stream" button to view
Founder and Science Administrator of the Axis Advocacy Foundation
Adrienne Bell-Cors Shapiro is a Sickle Cell Disease and stem cell Patient Advocate, the Founder and Science Administrator of the Axis Advocacy foundation, and a fifth generation mother of a child with Sickle Cell Disease. She is a recipient of the highest honor in the regenerative medicine community, the 2018 Stem Cell and Regenerative Medicine Action Inspiration Award. She was one of the first supporters of the work done by UCLA’S Dr. Don Kohn in bone marrow and later stem cell transplants. As a firm believer that stem cell science will cure Sickle Cell Disease, she has dedicated a large portion of her life to improving the lives and overall healthcare of those living with the disease. In the past four years Ms. Shapiro has found her voice as a stem cell activist, speaking at multiple forums in support of the funding for clinical trails through the California Institute for Regenerative Medicine (CIRM). Adrienne is a member of several CIRM Clinical Advisory Panels (CAP) for Stem Cell Clinical Trials as the Sickle Cell Disease Advocate. A role that allows her to have input throughout the clinical trial process. She is an ambassador for the Americans for Cures Foundation. Adrienne is also on patient advisory panels for the FDA, ASH, NASEM, AMA and the NIH Heart Lung & Blood. Her experience includes attending educational conferences and seminars, as well as meeting with lawmakers to promote support for the Sickle Cell Community. She is on the steering committee of The Cure Sickle Cell Initiative. Adrienne is on the board of several advocacy groups including Sick Cells and The California Chronic Care Coalition. She is a member of the FDA Patient Engagement Collaborative (PEC) and a member of the steering committee of the Paradigm Project for Academy Health. Adrienne believes stem cell science will be the answer. However, until we have a cure for Sickle Cell Disease, pain is a fact of the illness and humane treatment and support is required. Thus, Adrienne and Axis A