New Jersey student with sickle cell disease finds new hope with CHOP gene therapy

PHILADELPHIA (CBS) – New hope for patients Sickle cell diseaseis a disease that primarily affects African Americans, and gene therapy research at Children's Hospital of Philadelphia is said to be game-changing.

The first patient to receive the treatment outside of a research setting is a Cherry Hill college student who had been waiting nearly 20 years for the life-changing treatment.

Austin Lewis, 18, is an Eagles fan but has never been able to play baseball because he has sickle cell disease, which causes excruciating pain.

“It's all kinds of pain – sharp pain, numbing pain, tingling pain,” Louis said, describing the excruciating pain.

“We increase the amount of morphine depending on the level of pain,” said Austin's mother, Jennifer Lewis.

She said her son's life has been dominated by a genetic disorder that causes normal doughnut-shaped blood cells to turn sickle-shaped and build up, preventing them from carrying oxygen throughout the body.

“It's hard. It's heartbreaking. I feel powerless and like there's nothing I can do,” Jennifer Lewis said.

But now it is possible: Austin Lewis is the first patient at Children's Hospital of Philadelphia to receive the newly FDA-approved gene therapy outside of a clinical trial.

“This is one of the greatest advances in the treatment of sickle cell disease,” said Dr. Tim Olson of CHOP.

Olson is at the forefront of this research, which he describes as “groundbreaking.”

The treatment will begin by harvesting Austin Lewis' stem cells, then manipulating his DNA to normalize his blood.

“And this normal hemoglobin prevents the sickle cell complications that we see in sickle cell patients,” Olson said, “so this is effectively a cure and prevents all of these devastating disease complications from occurring.”

Austin Lewis will have to undergo chemotherapy before he can receive his edited stem cell transplant, which will mean a longer stay at CHOP.

“I just want to get there quickly,” he said.

“This is a milestone and we're so excited. Our family, my husband and I, have been waiting for this since he was just a baby,” his mother said.

For Austin Lewis, who is currently taking online university classes, life beyond sickle cell disease is a dream come true.

“I hope to be pain-free,” he said, “and be able to travel the world and do anything and really have my eyes open to see everything.”

Austin Lewis is looking forward to attending college in person next year, if possible, after a CHOP-led study of his gene therapy found that 96 percent of patients were pain-free for at least a year after treatment.

Stephanie Staal

Stephanie Staal is an Emmy Award-winning health reporter. She appears daily on CBS News Philadelphia and Philly57.

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