What the New Cure for Sickle Cell Disease Really Means
Notes from America with Kai Wright
WNYC Studios
4.4 • 1.5K Ratings
🗓️ 11 December 2023
⏱️ 50 minutes
🧾️ Download transcript
Summary
The Food and Drug Administration has approved gene therapy as a treatment for sickle cell disease, effectively making a cure available to many people affected by the genetic disease. Sickle cell disease is a group of inherited red blood cell disorders and is the most common form of an inherited blood disorder.
In this episode, Kai is joined by Ashley Valentine of Sick Cells, which seeks to elevate the voices of the patient community to influence decision makers and empower people with the disease to use their voices and not feel alone. Ashley co-founded the organization along with her late brother Marqus Valentine, who had sickle cell disease. She helps put this historic F.D.A. decision into context and shares how her own life experience informs her work advocating for people with sickle cell disease.
Plus, we meet 21-year-old Magaly Ghonda, who underwent her own sickle cell treatment. Magaly shares how living with the genetic blood disorder shaped her life, the realities of a sickle cell cure, and what she’s looking forward to in her post-sickle cell future.
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Transcript
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| 0:00.0 | Most acquaintances that I have I have, don't know I have so |
| 0:06.2 | so my close friends know that I have so self. |
| 0:09.2 | So it's something that I don't really like to share. |
| 0:12.0 | When I come into the ER, I'm just like, okay, going in here, |
| 0:16.5 | they're gonna think I'm addicted to pain medication. |
| 0:19.3 | How do I convince them that I'm not? |
| 0:21.6 | The pain is there. It's not something that you can |
| 0:24.5 | ignore but I have to ignore it just to get the day going. When my daughter was |
| 0:30.4 | very young I told her from the beginning, you're going to college, you're |
| 0:37.8 | going to succeed. We gotta figure out how to maneuver in this life. These are the cars that we have. We got to deal them. We got to play |
| 0:48.8 | what we've been given. it. It's Notes from America. I'm Kay Wright. Welcome to the show. |
| 1:15.4 | The voices you just heard were gathered from individuals and families living with sickle cell |
| 1:20.8 | disease by the Rutgers Cancer Institute of New Jersey. Sickle |
| 1:25.4 | Cell Disease is a genetic blood disorder that causes excruciating acute and |
| 1:30.4 | chronic pain among other health complications. |
| 1:33.0 | Anyone can be born with it, but it is particularly prevalent among people of African descent. |
| 1:39.0 | One in 13 black Americans are born with a trait necessary to develop the disease. |
| 1:44.1 | But in an historic development, just this past Friday, the Food and Drug Administration approved |
| 1:49.5 | two new genetic therapies for Sickle Cell. One of them will be the first human use of the gene |
| 1:55.8 | editing tool called CRISPR. The scientist who developed that tool won the Nobel Prize |
| 2:00.5 | for it a few years ago. There's some complicated science to |
| 2:04.1 | understand in this news but the take home is we're witnessing a big step forward |
... |
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