About UsLighthouse

Actions

'These options are crucial and wonderful:' Sickle Cell Warriors react to new treatment coming to Wisconsin

"These options are crucial and wonderful for the Sickle Cell Warriors because for so long it was nothing," said Starda Kelly Howard.
Sickle Cell Warriors of Wisconsin React to new treatment coming to Children's
Posted
and last updated

MILWAUKEE — Doctors are ready to bring a medical breakthrough to patients in Wisconsin.

The FDA recently approved the use of a gene-editing tool by CRISPR Therapeutics to treat long-overlooked genetic disorders like Sickle Cell Disease.

Officials at Children's Wisconsin say the Casgevy treatment can modify a patient's own stem cells so they are no longer producing sickle cells — which can cause health complications and lead to early death.

The MACC Fund Center for Cancer and Blood Disorders at Children’s Wisconsin is now offering the newly FDA-approved Casgevy therapy to children 12 years and older who have severe sickle cell disease or transfusion-dependent thalassemia.

Watch: 'Crucial and wonderful:' Patients React to Sickle Cell Treatment's WI Debut

Sickle Cell Warriors react to new treatment coming to Wisconsin

TMJ4 Lighthouse Team Reporter Ryan Jenkins goes in-depth, talking to neighbors throughout Milwaukee who are impacted by Sickle Cell Disease in various ways about what this new medical advancement means to them.

"It causes pain crises and those pain crises cause excruciating pain and can sometimes be fatal," said Tokara Henry, Executive Director of the Sickle Cell Warriors of Wisconsin. Henry said the announcement that this new treatment is coming to Wisconsin brings hope.

Tokara Henry
Tokara Henry, Executive Director of the Sickle Cell Warriors of Wisconsin

"We know that this is a potentially curable treatment and that is what the focus is," said Henry. "The focus is how can we learn from this, how can we be treated from this and how can we live with Sickle Cell Disease?"

Starda Kelly-Howard knows just how important clinical trials can be when it comes to treating Sickle Cell Disease.

Starda Kelly-Howard
Starda Kelly-Howard was recently treated for Sickle Cell Disease via a Bone Marrow Transplant.

"I didn't have many options," said Kelly-Howard who was recently treated with a bone marrow transplant. "So, the bone marrow and the gene therapy - these options are crucial and wonderful for the Sickle Cell Warriors because for so long it was nothing."

She is now living free of Sickle Cell Disease for the first time in 34 years.

"Making your own food, going to the grocery food to buy your food, or just coming outside to enjoy the sun. Couldn't do it," she said.

Star Joseph
Star Joseph, 12-year-old son has Sickle Cell Disease

That's a welcomed success story for Star Joseph whose 12-year-old son has Sickle Cell Disease.

"As a mom, you're supposed to be their protector and sometimes I feel like there's nothing I can do to help him, said Joseph. "I'll be watching him in pain. He has a lot of pain crises. But, he is such a strong kid. He's always smiling.

She hopes this advancement also results in more awareness surrounding Sickle Cell Disease.

1,200-1,500 families across Wisconsin are affected by Sickle Cell Disease.

CDC data shows more than 90% of people living with the disease in the U.S. are Black.

"As the world changes, technology is changing," said Joseph. "I love that they're being more aware."

Antonia Perry
Antonia Perry is a Sickle Cell Warrior!

Antonia Perry lost her brother to Sickle Cell Disease in 2018 and lives with the disease today. The news of new treatments coming to Wisconsin is "amazing."

"It gives hope for another day, for less pain, to be able to live a more so normal life," said Perry.

Families I spoke with tell TMJ4 News they often rely on blood donations during treatment. Recently the National Bloody Supply has dipped to low levels and that has many in our community concerned. One way you can help people living with Sickle Cell Disease is by donating blood.

The Sickle Cell Warriors of Wisconsin will host a Walk to Break the Sickle Cycle on Saturday, Oct. 12th at Lakeshore State Park

Click hereto learn more about the Children's Wisconsin Sickle Cell Disease Program.


Talk to us:
Hey there! At TMJ4 News, we're all about listening to our audience and tackling the stuff that really matters to you. Got a story idea, tip, or just want to chat about this piece? Hit us up using the form below. For more ways to get in touch, head over to tmj4.com/tips.


It’s about time to watch on your time. Stream local news and weather 24/7 by searching for “TMJ4” on your device.

Available for download on Roku, Apple TV, Amazon Fire TV, and more.


Report a typo or error // Submit a news tip