The NSGC Annual Conference showcases advancements across the breadth of the genetic counseling profession to provide education and build community. Each year, a memorial lecture is held in honor of Dr. Beverly Rollnick, a founding member of NSGC who made important contributions to the profession. This year’s session is titled “Ordering ‘The Cure’ With a Side of Trepidation: The Challenges of Gene Therapy for Sickle Cell Disease” and will be held Friday, September 20, from 9:00 a.m. – 10:15 a.m., with an encore chat also scheduled, which will begin at 11:45 a.m.

On December 8, 2023, the U.S. Food and Drug Administration approved two cell-based gene therapies for sickle cell disease (SCD), including one that utilizes CRISPR technology — the first of its kind to be approved. Despite the intention of this demonstrating a commitment from the medical community to cure this condition, there is mixed reaction among those in the SCD community, given the history of inequities in research, and disparities, mistreatment and disproportionate availability of adequate medical care for many individuals living with SCD.

Through a facilitated discussion with individuals with SCD from a variety of perspectives, the session presenters will highlight these individuals’ experiences and consider the factors, both positive and negative, that influence the decision to undergo a transformative therapy, and more broadly contemplate the issues that need to be addressed to ensure equitable opportunities to utilize them.

As you prepare for the NSGC Annual Conference, we hope you add this session to your list of must-attends. To get a taste of what to expect, read on for perspectives from a few of the panelists:

Terry L. Jackson, PhD, an assistant professor at Virginia State University, and an advocate for the SCD community, says:

“The extreme nature of sickle cell disease gives the impression that whether or not to get gene therapy is a no-brainer. Nevertheless, there are very real concerns, fears and identity issues that complicate such a decision. Things such an age, sex and disease severity are examples of variables that drive patient action plans. Ultimately, patients should be counseled according to risk factors, therapeutic options and sensitivity to personal rationale.”

Taylor John, a patient advocate in the process of receiving a gene therapy protocol wants attendees to leave this session with a better understanding of genetic therapies for SCD:

“It is my hope that attendees can walk away with a comprehensive understanding of the available genetic therapies for Sickle Cell Disease from patients and medical professionals that have firsthand experience with these groundbreaking studies.”

Lakiea Bailey, PhD, an advocate for the SCD community who has had her own experience with therapy, also shares what she expects attendees to take away:

“I hope that attendees walk away with the understanding that sickle cell is an emotionally and physically complex disease. Individuals living with sickle cell disease are often encouraged by well-meaning individuals to embrace helplessness — surrounded by advice on what we can and cannot do. Globally, sickle cell patients have rejected helplessness and are taking control of our health, including the difficult considerations surrounding gene therapies. Despite this, many have pre-emptively rejected the prospect of curative and transformative therapies out of hand, for very good reasons. Researchers and healthcare providers must take on the burden of understanding these reasons, while providing educational and mental health support to this community.”

In addition, we are honored to also have on the panel Victoria Gray, the first recipient of gene therapy for SCD using the CRISPR technology. She shares her hopes for those attending the session:

“I want attendees to take away a deeper understanding of how sickle cells affect patients. I want everyone to know that SC warriors all have families, dreams and fears. Whenever we seek medical care, our pain is real, and we deserve to be properly cared for by the medical teams that we entrust our care with.”

At the NSGC Conference, attendees will gain knowledge of clinical and scientific best practices and insights into emerging research. The conference provides a unique opportunity to engage and network with colleagues and pursue professional development. Register today to join us this September 17-21 in New Orleans, LA at the Ernest N. Morial Convention Center.

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