Menu

A new hope: VCU Health patients first in Virginia to receive newly approved ALS treatment

Featured photo
Jerry Creehan talks with reporters on Aug. 23 as he receives the first new FDA-approved ALS medication in more than 20 years. Creehan and two other VCU Health patients were the first in Virginia to receive the new treatment.
Photos by VCU Public Affairs

For many years, Jerry Creehan’s plan for retirement included teaching wine tasting classes. He is a certified wine specialist and counts the fermented refreshment as one of his passions, along with his grandchildren, his church and his Pittsburgh sports teams.

In 2016, Creehan’s planned path to spending his days teaching others about the subtleties in blushes, burgundies, cabernets and chiantis began to veer in an unexpected direction. The turn started with a steadily increasing weakness in his legs. Then, he began to fall on occasion.

“When I couldn’t get up from those falls is when I realized I need to see someone in tune with this kind of problem,” he said.

After seeing several doctors, Creehan found VCU Health’s Neuroscience, Orthopaedic and Wellness Center, where Scott Vota, D.O., director of the Neuromuscular and ALS clinics at VCU, diagnosed him with amyotrophic lateral sclerosis. ALS, often referred to as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. It progresses to involve muscles that control vital functions such as speech, swallowing and breathing. Life expectancy after diagnosis is two to five years.

“It’s actually a diagnosis of exclusion, so they try to exclude everything on the list because the last thing a provider wants to tell a person is that that they have ALS,” said Creehan’s wife, Sue, a nurse manager for wound care at VCU Health. “It was very devastating to us when we got that news on Jan. 12, 2017. It was like we got kicked in the gut. Our entire world changed.”

VCU Health Starts 1st Round of Breakthrough ALS Drug

Creehan began treatment for his ALS, started using a breathing machine at night, and familiarized himself with adaptive devices such as tools to help with everyday tasks and a power wheelchair that will be a part of his life moving forward.

But on Aug. 23, the family had something to be optimistic about again. That day, Creehan was one of the first three patients in Virginia to receive a new drug for ALS called Radicava. The drug, which is administered via infusion every day for 14 days initially, and then periodically for the rest of a patient’s life, is expected to slow the progression of ALS by 33 percent.

“I’m very grateful,” Creehan said. “Thirty-three percent could be an extra two years. That is the definition of hope.”

“This isn’t a cure, but there is a great chance that it is going to prolong the quantity and quality of our patients’ lives, and that is exciting,” Vota said. “It instills hope where there hasn’t been hope before. They’re going to be able to walk longer, eat longer, speak longer and move around and engage with family and friends for longer than they would have before.”

Vota said as soon as his ALS clinic team received word from the Food and Drug Administration in May that the drug was approved, they began working as quickly as possible to get it to their patients. The interdisciplinary VCU Health team includes physical therapists, respiratory therapists, dieticians, social workers, nurses, physicians and a research coordinator. Patients see each of the specialists every visit. Creehan has been impressed with the group.

Scott Vota (right), speaks with Jerry and Sue Creehan on Aug. 23 as Jerry receives an infusion to treat ALS.
Scott Vota (right), speaks with Jerry and Sue Creehan on Aug. 23 as Jerry receives an infusion to treat ALS.

“My first visit was a four-hour appointment, and by the time I met with the last person, I was in tears because of the love, the care and the compassion that exuded from each of them,” he said. “I couldn’t have felt more at home if I was at home.”

Creehan also said he has been amazed at how the VCU Health team members communicate among themselves, always letting the other specialists know if something relevant came up in their conversation with Creehan that could be useful to the team.

Many of the therapies and health care providers Creehan has encountered in his time with VCU Health are supported by Harper’s Hope, a fund established in 2014 by another VCU Health ALS patient, Vic Harper, to support disease research and care of those who are battling it.

On Aug. 23, as Creehan sat next to his wife on the MCV Campus receiving his first Radicava infusion, he said he’d like to help raise awareness and support VCU’s ALS clinic through Harper’s Hope.

He planned to do something to raise money and give it to the fund, he said, maybe by teaching a wine class.

 

Subscribe for free to the VCU News email newsletter at http://newsletter.news.vcu.edu/ and receive a selection of stories, videos, photos, news clips and event listings in your inbox every Monday and Thursday during the academic year and every Thursday during the summer.